Juvenile idiopathic arthritis (JIA) is the most common chronic paediatric rheumatic disease and an important cause of short and long-term disability and quality of life impairment.
Due to the disease heterogeneity and the differences in epidemiology, treatment approaches and drug availability, there are likely many differences in the outcome of children with JIA across the world. Although several outcome studies have been published by now, most of these researches have involved single centers or a few countries in the same geographic area and a comparison of the disease outcomes across different regions of the world has never been attempted. Furthermore, most past analysis have focused on single aspects of disease outcome, such as remission, functional disability, radiographic damage, or health-related quality of life and a multidimensional approach in outcome assessment has rarely been pursued. Outcome has not frequently been evaluated through the combination of parent- and physician-centred measures and children self-report of outcome status has rarely been considered. Moreover the disease status has seldom been validated with an objective evaluation performed by the physician.
By involving more than 50 countries belonging to the network of Paediatric Rheumatology INternational Trials Organisation (PRINTO certified ISO 9001-2008, www.printo.it) EPOCA (EPidemiology, treatment and Outcome of Childhood Arthritis) aims to devise a new tool that enables the multidimensional assessment of the disease status in children with JIA. This new instrument, named Juvenile Arthritis Multidimensional Assessment Report (JAMAR), is simple easy to apply and multidimensional in nature. JAMAR′s objectives are to foster the use of standardized quantitative outcome measures in daily care and to enable comparability of outcome data across different centers. Most clinical measures currently used to assess the disease status, particularly functional ability and health-related quality of life questionnaires, are lengthy and complex. According to agreed international guidelines JAMAR will be widely agreed upon and translated, cross-culturally adapted and validated in different languages by the PRINTO coordinators.
- To translate, cross-culturally adapt and validate the JAMAR in the language of each participating countries
- To compare the current outcomes of children with JIA across continents and countries.
-To characterize and compare the frequency of the JIA categories in different countries and in different continents.
-To describe and compare the prevalence of iridocyclitis in different continents and in different countries.
-To define and compare the prevalence of ANA in the different JIA categories across diverse areas of the world.
-To compare the treatments used in the management of children with JIA in different countries.
-To obtain information on the access to biologic medications in different countries.
-To compare the same outcomes by disease category.
-To promote regular use of quantitative measures, either physician-centred or parent/patient-centred, in the assessment of children with JIA in standard clinical practice.
-To foster uniformity and standardization of clinical assessment of children with JIA across different countries.
PRINTO is currently proceeding with the publication of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) supplement on a dedicated issue on parent/patient-reported outcomes (PROs) in juvenile idiopathic arthritis (JIA) in Rheumatology International. The supplement will contain one paper for each cross culturally adapted and validated version of the JAMAR (title example: The Italian version of the JAMAR, etc.) and a general introductive manuscript with the description of the methodological approach).
The authorship of each manuscript is defined according to PRINTO policy for authorship and completed with local input. The main responsible(s) of the project in each country is listed in the first 3 positions of the author list. All significant contributors as per the ICMJE criteria, during the translation and data collection phases of the study, can be reported in the list of co-authors. Minor contributors can be added in the acknowledgment section. Via separate email we are contacting all the co-authors for each specific manuscript in order to revise the draft of the paper and to finalize the list of co-authors. The supplement will be submitted at the latest by summer 2016.
At present, the EPOCA data collection has been completed by 35 countries and it is still on going in other 16. Globally, more than 8500 JIA patients and almost 4000 healthy controls from 131 centres in 53 countries have been currently collected and confirmed through the dedicated online database. The statistical analysis and the paper drafting has been already completed by the PRINTO coordinating centre for 32 manuscripts (one manuscript per country).
If you are interested in the project, please contact the PRINTO coordinating centre for the complete set of information (material for ethics committee submission, protocol, data collection forms).